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Tuesday, 16 October 2012

MS Update: Big Decisions

Today I
hopped on a boat to see my Neurologist for what should have been a
simple and quick appointment of how my drugs are going and them
ticking the box to say they are happy for me to keep going with the
treatment. Unfortunately I had some pretty bad news instead.

They are
not happy with the rate my disease is progressing. I'm relapsing over
and over and even though my Copaxone injections have helped a lot and
made my relapses less severe, the fact is I'm still relapsing. As
soon as I recover BAM. Relapse again. On the outside I am doing
remarkably well considering. I only have to use my crutches when I'm
having a bad day and although I walk with a really fashionable limp,
I still walk as much as my body will let me.

The
problem is on the inside. With every relapse there is permanent
damage to my central nervous system and brain. When I think about
this I realise just how lucky I am that I'm still walking. Even the
neurologists are amazed. But the point is all the damage will hit me
on the outside, and already is slowly.

I have
been advised to try the Natalizumab(Tysabri®)treatment. A monthly infusion of
lovelyness to try and stop the progression of the disease. There are
so many things to think about with this treatment. If it works it's
as close to a cure I could get. But it carries the very dangerous
risk of PML. A nasty brain infection that can be fatal.

I wont
bore you with the facts, all the info can be found in the link above. This is really just a quick update on the MS side of things
and what's going to be on my mind for the coming couple of months.
It's a big thing. I'm finding it very strange having to think about
the future when I have forced myself not to, and to just live day by
day as the future when you have MS is just depressing. I will be on
the treatment between 2 and 5 years max and have to take things into
consideration such as having more children and the fact that, the
longer I leave it, the worse I'm going to get and the overall results
of the treatment wont be as good as getting on it ASAP. Sooner you
fight it, the better it is for the treatment to try to stop
progression...if that makes sense.